disability

What disability professionals say 'tell us your story' and mean 'tell us we're wonderful'.

If a disability professional asks you to come and address their professional group, be very careful — especially if they ask you to "tell your story". Sometimes disability professionals are prepared to learn from disabled people, but more often than not, it’s a setup for humiliating emotional exploitation.

Most disability professionals form their professional consensus on The Enlightened Approach to Disabled People without many or any disabled leaders in the room. Having already decided what they will do to us, disability professionals then bring in disabled people as validation fairies to help them feel the way they want to feel about it.

Even if the person approaching you seems nice, it’s worth being cautious — don’t trust a smile; look for evidence about whether or not they are prepared to take you seriously as an expert. Most disability professionals don’t want to learn from our expertise; they want us to help them feel good about themselves. What they usually want from us is an emotional performance that validates their self image and the approach they’ve decided to take to disabled people.

They want to feel inspired, without facing difficult truths. They want to feel moved, without changing. They want to say “I learn so much from you!” without reconsidering their worldview or professional practice,  and they want to say “You have such a unique perspective!” to every disabled speaker, while treating us as largely interchangeable. (Disability professionals who are actually prepared to learn from us acknowledge gaps in their expertise, and seek out disabled experts to teach them what they need to know.)

When disability professionals *mean* “come make us feel good about ourselves”, what they usually *say* is some version of “we have so much to learn from your unique perspective” or “my colleagues need to hear your story”. When disability professionals ask a disabled person to “tell your story”, they generally expect us to follow these unwritten rules:

  • Tell the audience horror stories about your childhood that allow the listeners to feel righteous because We Would Never Do Such Things.
  • Make sure that the stories are graphic, but not too graphic. Horrify the audience enough so that their pulses raise a bit and they feel brave for listening to you, but be careful not to horrify them so much that they have nightmares.
  • Make sure that you tell the story in a way that doesn’t make them feel ashamed or responsible for any of it.
  • Give them someone to identify with so they can feel like excellent people. Usually it's either "my mom never gave up on me!" or "there was this one awesome teacher who showed me how to believe in myself!"
  • Don’t talk about the lingering harm done to you, or how it’s affecting you in the present. Don’t make them think about harm done to disabled kids who are facing lifelong consequences of that harm. Don’t talk about present-day injustice, discrimination, or violence.
  • Tell your story as a tragic misunderstanding. Don’t talk about discrimination or systematic injustice. 
  • Allow your audience to laugh at you. Tell self-deprecating jokes. Don’t insist on respect.
  • Don’t describe solidarity with other disabled people, and don’t attribute any of your success to other disabled people who you regard as equals. 
  • Don’t describe fighting with a professional and winning, unless you can attribute your victory to someone they can identify with. 
  •  Don’t be angry, and don’t describe other disabled people’s anger as legitimate. (Under some circumstances, it may be permissible to describe it as understandable, but only if you’re appropriately condescending and give the impression that the therapy provided by the professionals in the room would fix it.)
  • Don’t talk about disability in political terms. Say that “times have changed”, without giving any credit to disabled people who fought for those changes. 
  • Do not mention organized groups of disability activists, especially organized groups of disability activists who exist in the present and clash with disability professionals. 
  • At the end of the presentation, open the floor for Q&A. When audience members presume that it’s ok to ask you intrusive personal questions, smile and give them an answer that makes them feel good about themselves. 
  • When you’re in the audience of their presentations, do not expect this intimacy to be reciprocated, and do not expect them to show similar concern for your feelings. 
  • Understand that you’re here to validate them, and they’re not there to validate you. Pretend that what they’re doing is listening and learning.
  • Don't break character, and don't drop the mask. Don't acknowledge the unwritten rules or the unwarranted emotional validation they want from you. Accept compliments about your "honesty" and "authentic first hand perspective" with a straight face.
  • Above all, do not talk about being harmed by disability professionals who there’s any chance your audience would identify with.

When disability professionals expect you to be their validation fairy, this is a form of ableism and emotional exploitation. They should not be treating your life as a story about their benevolence as disability professionals. They should not be treating you as existing for the purpose of making them feel good about themselves. They should be treating you with respect as a real human being — and if you are an expert, they should be treating you with the professional respect due to a colleague.

I am not the validation fairy, and neither are you.

Image description: Text "I am not the validation fairy" next to a line art drawing of a fairy casting a spell with a magic wand.

Image description: Text "I am not the validation fairy" next to a line art drawing of a fairy casting a spell with a magic wand.

In defense of distracting fidget toys

One problem with the way stim/fidget toys are discussed is that there’s often a false dichotomy drawn between good fidgets that help people to focus, and bad fidgets that distract people. Focus is not the only legitimate reason to use a stim toy.  

Further, being focused on your surroundings isn’t always a good thing. Sometimes, the main reason a stim toy is useful is *because* it is distracting.  For instance, some people use stim toys to distract themselves from trauma triggers. When an environment is triggering, it can be really helpful to have a way of temporarily ignoring it. 

Some people use stim toys to distract themselves from pain or sensory overload. Distracting stim toys can be a way to take a break without having to leave the room. Fidget spinners in particular often work really well for this.

There are any number of ways to use stim toys. Some uses, like holding a rock in order to remind yourself where your hand is, have little or nothing to do with focus one way or the other. They serve a different purpose. 

We shouldn’t let “they help with focus” be the only use of stim toys we acknowledge as legitimate. The other ways they are used also matter. And sometimes, getting distracted is the whole point. 

One reason to tell your kids about their disability

Kids eavesdrop. No matter how hard you try to keep things from them about their disability, they will eventually succeed in overhearing you. 

The time kids are most likely to succeed in eavesdropping is when you are the most upset about their disability — because being upset and overwhelmed takes a lot of energy, and it makes it harder to pay attention to keeping kids from overhearing.

Further — kids these days have access to Google. When kids overhear adults talking about their disability, they are likely to investigate by googling it. The first result for their disability is probably *not* what you want your kid to believe about themself and their future.

Talking to your kids about their disability is much better than letting them find out about it from googling what they overhear. 

Image description: "Talk to your kids about their disability" next to a drawing of an adult holding hands with a child.

Image description: "Talk to your kids about their disability" next to a drawing of an adult holding hands with a child.

Disability is not an abusive roommate

Nondisabled storytellers often seem to think of disability as an abusive roommate coming and imposing its will on a disabled person. When they think about wheelchair users, they don’t think about the mobility that’s made possible by assistive technology. They think about how they’d feel if someone chained them to a wheelchair and forcibly prevented them from walking.

This misconception is dangerous. When people see disability-related limitations as similar to violent restraint, they don’t know know to tell the difference between the innate limitations of someone’s body and limitations being forcibly imposed on them by others. When people don’t understand the difference between living with a disability and living with an abuser, they assume that abusive experiences are inevitable for people with disabilities. 

In reality, there’s nothing inevitable about abuse. Coming up against the limitations of your body is fundamentally different from being forcibly restrained by someone else. Whether or not you are disabled, having physical limitations is part of having a body. Being disabled means that you have a different range of physical limitations than most other people do, but they don’t come color coded ‘normal’ and ‘disabled’. When you’re used to the way your body works, the disability-related limitations feel pretty similar to those that aren’t disability-related. 

Using assistive technology is pretty similar to using technology for any other important reason. Everyone uses technology to do things that their bodies alone would be too limited to do. Most people use cars to go further than they could walk; some people also use wheelchairs to go further than they could walk. Some people type or use communication tablets to say more than they could with their bodies alone; some people use musical instruments; some people use both. People with disabilities have different limitations, and as a result, often benefit from technology that wouldn’t be particularly useful to nondisabled people. 

When technology is associated with disability, people tend to have the dangerous misconception that using it is the same as being restrained. This can very easily become self-fulfilling. When people prevent disabled people from doing things, their inability to do it is often misattributed to their disability. For instance:

Wheelchairs as restraints:

  • Anthony lives in a nursing home.
  • Anthony speaks oddly, and most people interpret most of what he says as meaningless. They say ‘Anthony doesn’t communicate’.
  • Anthony can walk and wants to walk, but the nursing him staff don’t let him. 
  • George, the supervisor, tells Sage, another staff member, ‘Anthony wanders. We need to keep him in his wheelchair to keep him safe. Just lock the seatbelt. After a few minutes, he stops resisting.’
  • Every morning, Sage puts Anthony in a wheelchair that he can’t move, and ties him down so he can’t escape.
  • Sage tells Marge, a new volunteer, ‘That’s Anthony. It’s so nice to have a volunteer - he’s been spending most of his time in the hallway lately. He doesn’t walk or talk, but he loves visiting the garden! Can you take him there?”
  • Marge and Sage don’t know what Anthony actually wants, and it doesn’t occur to them that it’s possible to ask.
  • Anthony actually hates the garden and hates being pushed by other people. He prefers to spend his time in the library or with children in the children’s wing.
  • Marge assumes that Sage is the expert on Anthony, and assumes that Anthony’s disability prevents him from walking and communicating.
  • Marge doesn’t know that Anthony has stopped talking because he’s constantly surrounded by people who refuse to listen to him. 
  • Marge doesn’t know that Sage is tying Anthony to a wheelchair against his will to stop him from going where he wants to go.
  • Marge doesn’t know that she’s doing something to Anthony against his will.
  • When people see disability and restraint as the same thing, they fail to notice that people with disabilities are being violently restrained — and often unwittingly participate in physical abuse of disabled people. 

The disability-as-restraint misconception also causes people to fail to understand that when they deny people access to assisstive technology, they’re preventing them from doing things, eg:

Mobility:

  • Beck is an eight year old who can’t walk.
  • Beck has a wheelchair, but he’s not allowed to bring it to school.
  • At school, he’s strapped into a stroller that others push around. 
  • His classmate Sarah has *never* had a wheelchair that she can push herself.
  • At a staff meeting, Lee, their teacher, says “Because of their disabilities, Sarah and Beck can’t move around by themselves. Even though they stay in one place all day, they’re so fun to have in our class!”
  • Lee is missing the crucial fact that the reason Sarah and Beck are immobile is because they’re being denied access to assistive technology. 
  • When people see disability and externally-imposed limitation as the same thing, they don’t notice limitations being imposed on disabled people. 

Communication:

  • Rebecca types on her iPad to communicate.
  • Clay takes away Rebecca’s iPad.
  • Clay tells Sophie, ‘Rebecca is nonverbal. Her disability prevents her from communicating, but we’re working on improving her speech.’
  • Sophie sees that Rebecca can’t talk, and assumes that it’s her disability that’s preventing her from communicating.
  • Actually, it’s *Clay* who is preventing Rebecca from communicating.
  • When people see disability and abuse as the same thing, they don’t notice abuse of disabled people.

It’s important to be clear on the difference between disability and abuse. Disability is not an abusive roommate; people with disabilities are only abused if someone is abusing them. When people with disabilities are restrained against their will, this is not caused by their disabilities; it’s caused by the people who are restraining them. Restraint is an act of violence, not an innate fact about disability. When wheelchairs are used as restraints, the wheelchair isn’t the problem; the violence is the problem. When people are denied access to assistive technology, it’s not their disability that’s limiting them; it’s neglect. When we stop conflating disability and abuse, we’re far less likely to see abuse of people with disabilities as inevitable.

Image description: A photo of gloomy-looking stairs next to the text "Disability is not an abusive roommate".

Autism stereotypes and Not Autism Syndrome

People who have rare developmental disabilities are often misdiagnosed with autism.  This happens in part because a lot of disabilities look similar in early childhood. When kids with undetected rare genetic conditions start ‘missing milestones’, they are often assumed to be autistic. 

When people are assumed to be autistic, autism stereotypes get applied to them. They’re often assumed to be uninterested in people and communication, and they’re often put into ABA programs prescribed for autistic people. They face the same kind of degrading and damaging misunderstanding that autistic people do.

When advocacy organizations address the issue of misdiagnosis, they tend to say some form of “It’s important to distinguish between autism and Not Autism Syndrome, because demeaning autism stereotypes only accurately describe autistic people.” 

Here’s a Rett Syndrome example: “The child with RTT almost always prefers people to objects, but the opposite is seen in autism. Unlike those with autism, the RTT child often enjoys affection.”

And a Williams Syndrome example:

“Unlike other disorders that can make it difficult to interact meaningfully with your child, children with Williams Syndrome are sociable, friendly and endearing. Most children with this condition have very outgoing and engaging personalities and tend to take an extreme interest in other people.”

Statements like these suggest that the problem with autism stereotypes is that they're applied to the wrong people. The thing is, demeaning autism stereotypes *aren’t true of anyone. We all have feelings and thoughts and the capacity to care about things and relate to other people. Accurate diagnosis matters, but not as a way of sorting out who is and isn't fully human. We're all fully human, and no one should be treated the way autistic people are treated. We shouldn't pass around stereotypes, we should reject them.

On solving the right problem

Not every problem disabled people have is a failure to understand social situations.

Sometimes the problem is that our bodies are considered socially unacceptable.

No amount of social skills training will change our bodies.

No amount of social understanding will make typical movement and typical speech physically possible.

No matter what we learn, bodies and brains matter. We’re still disabled when we understand things.

It’s ok to be disabled. It’s not ok to be bigoted against disabled people.

If we want to get anywhere, we need to make sure that we’re solving the right problems.

Absolution seeking behaviors

Dear disability professionals,

We need to talk about your absolution-seeking behavior. When disabled people go to conferences, disability professionals flock to us and ask us to help them feel good about themselves and their field. This isn’t ok. It needs to stop, and you need to be part of stopping it.

This is never ok, but it’s especially bad when it’s a defense against listening. Disabled people often put themselves on the line to bear witness to the problems in the disability field. When we do this, the last thing it’s appropriate to do is seek out validation. It’s a time for reflection, not absolution.

Too many disabled disability advocates are having some version of this conversation with disability professionals:

  • Disabled Advocate: Your field is doing serious harm to disabled people. 
  • Disability Professional: Tell me about it! They’re all awful. But not me, I’m the exception. I’m one of the good ones.
  • Disabled Advocate: How?
  • Disability Professional: I am the exception because I recognize the uniqueness of individuals by doing Something Disabled Advocates Oppose and Another Thing Disabled Advocates Lobby Against. I’m sorry you’ve had such bad experiences with other people in my field, there are a lot of bad apples!
  • Disabled Advocate: Actually, the things you’re describing are the things we object to in your field, and here’s why.
  • Disability Professional: I agree with you! That’s why I do those things. I’m one of the good ones.

Please stop doing this to disabled people. Please stop assuming that you’re one of the good ones and that what we say doesn’t apply to you. Everyone seems to think of themselves as an exception because they have helped some people or had some sort of good intentions.

Please keep in mind that it is not remotely unusual to do good things in the disability field. Most people who have done great harm have also done some good. That doesn’t make you special, and it doesn’t erase anything you’ve done to disabled people. Good intentions don’t heal broken bones or broken dreams. Don’t seek absolution from us. Listen to us, acknowledge the problems, and find ways to do better.

Sincerely,
The disabled presenter who you called inspirational

On bearing witness to the humanity of disabled people and the destructiveness of ableism

One of the most powerful things that we can do is to bear witness to the humanity of disabled people and the destructive consequences of ableism. When we bear witness to our humanity and to the things that others do to us, it changes the conversation. Our stories are powerful.

Some people have the privilege of being largely untouched by ableism. (Or being untouched by a particular kind of ableism.) Most people who are privileged in this way are also unaware of how deeply marginalized disabled people are being harmed. (I’m using disability as the primary example here, but this actually applies to ever kind of marginalization.)

We are dehumanized, and a lot of people don’t notice that it’s happening. They’re taught to overlook our humanity, and a lot of what happens to us is hidden from them. When people learn how to notice, they often start caring.

Bearing witness to our humanity means making it impossible to discuss disability in the abstract. It means making people have to notice that when they talk about disability, they’re talking about *actual human beings*. We do things. Some of us have jobs. Some of us are artists. Some of us write. Some of us are married. Some of us are fans of TV shows. Some of us are experts in our fields. Some of us cook. All of us matter. Making people notice us as real human beings changes the conversation about disability.

Speaking out about the consequences of ableism also changes the conversation. When institution survivors bear witness to what happens in institutions, it becomes much more difficult for people to believe that institutionalization is good for disabled people. When people speak out about what authoritarian childhood therapy did to them, it’s harder to pretend that compliance training is harmless. When people speak out about electric shock, it is much harder to pretend that people who are tortured with electric shocks think that it makes their lives better.

When disabled people talk about what it is like to learn the name of their disability by eavesdropping and googling, some parents listen. Likewise, when disabled people talk about what it’s like to grow up without accurate language for ourselves, some parents come to understand the importance of talking to children about their disabilities.

Bearing witness also matters to other disabled people. We often learn to overlook our own humanity. We often learn to disregard the things that others have done to us. When other disabled people are unapologetically human, it’s easier to see ourselves as human. When other disabled people talk about the harm ableism does, it’s easier to remember that these things shouldn’t happen to us.

This doesn’t always work. When people with disabilities bear witness to our humanity and to what happens to us, we often get hostile responses. Even when some people are listening, there are usually also angry people who are not. Even when people are eventually willing to listen, they are often initially angry and mean. Those of us who talk about these things pay a price for doing so. Everyone has the right to decide for themselves whether this is a price they’re willing to pay in a given situation.

Your stories belong to you. Stories can be a powerful force for liberation, but you are not a liberation object. You are a person. You have the right to decide whether or not to tell your stories. If you choose to tell stories, you have the right to decide which stories to tell, how you want to tell them, and who you want to tell them to. (Including, whether or not you want to answer questions that people ask you.) You can also change your mind. Doing some advocacy work doesn’t make you an advocacy object, and it doesn’t strip you of the right to say no. No matter how politically or socially useful your stories are, they belong to you.

You can't fight stigma by making disability unspeakable

I’ve noticed that a lot of well-meaning people try to fight disability stigma by making disability unspeakable.

The logic seems to be like this:

  • They notice that when people are seen as disabled, they are respected less. 
  • They call this stigma, and think of stigma as a very bad problem. 
  • They then try to figure out how to make stigma go away so that people will be respected more.
  • They think that if no one was seen as disabled, there would be no stigma.
  • They try to get people to pretend that disability doesn’t exist.
  • They expect this to somehow improve the lives of people with disabilities. (On the grounds that if everyone ignores disability, there will be no disability stigma.)

This approach doesn’t work. Disability exists, whether or not anyone is willing to acknowledge it. When we try to fight stigma by ignoring disability, we send the message that disability is unacceptable.

When people are made to pretend that their disability does not exist, they learn that basic things about their body are unspeakable. When people are made to pretend someone else’s disability doesn’t exist, they learn that if they stopped ignoring basic things about them, it would be impossible to keep respecting them. These are not good lessons.

If you need to pretend someone isn’t disabled in order to respect them, you’re not really respecting them. You’re giving imaginary respect to an imaginary nondisabled person. People with disabilities deserve better. People with disabilities don’t need fake respect handed out as a consolation prize. People with disabilities need to be treated with real respect, as the people they really are.

If we want to fight stigma, we have to get real. Disability exists, and pretending that it doesn’t just makes the problem worse. Stigma is not caused by noticing disability; stigma is caused by ableist attitudes towards disability. It is ok to be disabled, it is not ok to be ableist, and it is upon all of us to build a culture that understands that.

The drawbacks of anger, and some alternatives

A lot of things that are normal aren’t ok. It’s hard to notice this. We’re socialized to accept a lot of things that really ought to be unacceptable. When we try to object, we’re punished. Being punished for objecting is often humiliating and disorienting.

It’s hard to remember that these things are wrong even when others punish you for saying so. It’s hard to remember that you have rights when others act like you don’t.

One way to remember that things are wrong is to get angry about them. Feeling outraged can make it easier to hold onto your sense that, no, this isn’t ok, and yes, it is ok to object.

Unfortunately, the price of rage is high. Rage hurts. It’s physically unpleasant, physically exhausting, emotionally draining, and makes it hard to think clearly. The physical and emotional exhaustion from anger makes it harder to do other things. The fog of anger can lead to mistakes that make it harder to remember after the fact that you were justified in objecting. Rage is better than nothing, but there are other strategies that don’t hurt as much.

One thing that can help is to develop your understanding of the situation over time. If you learn to understand what you’re angry about and why, it can make it possible to use understanding rather than anger to stay oriented.

Questions like these can help:

  • What am I angry about?
  • Why am I angry about that?
  • What happened that I think is wrong?
  • Why do I think it’s wrong?

For instance, say I’m in class, we’re doing an activity, I’m not able to do the activity, and I’m feeling angry. We’re writing thoughts on big paper, and I can’t do handwriting well enough to participate. In that situation, I might think:

  • Why am I angry?
  • I’m trying to participate and failing over and over and that’s intensely frustrating.
  • Why am I angry about that?
  • Because I’m sick of being left out all the time.
  • What happened that I think is wrong? 
  • The teacher knew about my disability and didn’t do anything to accommodate it when they planned the activity. 
  • When I pointed out that I couldn’t participate, they didn’t do anything to fix it.
  • Why do I think that’s wrong? 
  • Because I have a right to be here, and the teacher is supposed to be teaching me. 
  • I’m a student here, and I have the right to learn the material and be part of the activities we’re using to learn it.
  • This is disability discrimination, and that’s wrong.

Then, the next step in using understanding rather than anger is to notice that something is wrong before you start feeling enraged. Sometimes that can make it possible to fix the problem without having to get to the point of outrage. It can also make it more possible to decide when to fight and when not to.

For instance, take the class activity. If I remember that I have the right to be there and that it’s the teacher’s responsibility to teach me, this might happen:

  • I go to class and see that there is big paper on the walls.
  • I remember that I can’t do big paper activities.
  • I remember that I have the right to participate in educational activities.
  • I remember that I have the right to learn the material.
  • I ask right away “Are we doing a big paper activity today? How will I participate?” 
  • At this point, I’m annoyed, but not outraged, and able to assert something without it hurting so much.

They may or may not respond the right way — and I might still get really angry. But if that happens, I can repeat the strategy again, figure out what I’m angry about and why. Then I can get further without depending on anger the next time. (Even when you can’t win or fix the problem, it’s still often possible to use that kind of strategy to stay oriented without rage. I have more posts in the works about that specifically.)

Anger isn’t a failure. It’s ok to be angry when unacceptable things are happening. It’s also ok *not* to feel physically angry. Anger hurts, and you don’t owe anyone that kind of pain. You don’t have to be pushed to the point of rage in order to be justified in objecting to unacceptable things.

Sometimes it might help to explicitly remind yourself of this. Some affirmations that have sometimes worked for me:

  • I don’t have to hurt myself to prove that this is wrong.
  • It’s still wrong if I’m calm. 
  • It’s still wrong if I’m not crying and shaking. 
  • It’s still wrong if my heart isn’t pounding.
  • Even if I’m ok, the situation isn’t ok.
  • Even if I’m ok in this moment, it’s ok to object to a situation that’s hurting me and/or others.

It also helps not to beat yourself up for getting angry. Anger in the face of outrageous things isn’t a failure. No strategy can completely replace physical outrage for anyone. Holding yourself up to impossible standards won’t help. Working on your skills at staying oriented in other ways will.

These strategies are harder to learn and harder to use. They also make it a lot more possible to resist and stay oriented without hurting yourself. It’s not all or nothing — any skills in this area help, and it gets easier with practice.

"It's not just about wheelchair access"

I think that in disability discourse, wheelchair users face some fairly unique pressure to pretend not to be disabled. At the same time, wheelchair users are treated as the ultimate symbol of disability. In combination, I think there is very little space in which wheelchair users are allowed to talk about their actual experiences and needs. (Even in disability rights space.)

To some extent, all disabled people face some version of this. The thing I think is somewhat unique to wheelchair users is pressure to be the model of successful accessibility. There’s a misconception that accessibility is basically a solved problem for wheelchair users, and that we need to expand that model to all disabled people. This goes alongside a related misconception that the purpose of accessibility is to make disability irrelevant.

Wheelchair users face intense pressure to enthusiastically pretend that wheelchairs and ramps erase disability. This goes alongside pressure to have exactly the kind of disability that fits the story that others want to tell. The story goes: “Wheelchair users can’t walk. Wheelchairs and lifts and ramps solve that problem. If we had ramps everywhere, wheelchair users wouldn’t be disabled anymore.” The reality is much more complicated.

People get very angry when wheelchair users contradict this story. Wheelchair users are often not allowed to have access needs that don’t fit the story — and they’re also not allowed to have *abilities* that don’t fit the story. This anger is so intense that it’s dangerous for wheelchair users to stand and walk in public places. People also get angry at wheelchair users when a ramp is too steep, when it’s blocked, or when they insist that the existence of a lift isn’t good enough, they need to have the key so that they can actually *use* it. There’s not much room in the wheelchair access success story for talking about these realities.

There’s also not very much room in this success story for talking about the realities of growing up with a mobility disability. Children still grow up manhandled by therapists and pressured to learn to walk at all costs. Children still go through repeated surgeries aimed at fixing them. Children still get taught to allow adults to hurt them and touch them in ways that would be regarded as abuse if they were typically developing. Children are still pervasively excluded from educational and recreation activities and expected to bear it with a smile. Ramps and wheelchairs didn’t fix that, and accessibility advocacy should not make those things unspeakable.

The success story has even less room for talking about pleasure. Harriet McBryde Johnson said it better than I could, so I’m going to quote her:

“We need to confront the life-killing stereotype that says we’re all about suffering. We need to bear witness to our pleasures. …

Throughout my life, the nondisabled world has told me my pleasures must be only mental, never physical. Thinking to help me, it has said my body is unimportant. I respectfully disagree. For me, the body—imperfect, impermanent, falling apart—is all there is. Through this body that needs the help of hands and machines to move, that is wired to sense and perceive, comes all pleasure, all life. My brain is only one among many body parts, all of which work through one another and cooperate as best they can.”

McBryde Johnson, Harriet. Too Late to Die Young: Nearly True Tales from a Life (p. 255). Henry Holt and Co.. Kindle Edition.

Treating wheelchair users as a symbol of disability successfully erased has the effect of silencing wheelchair users. I think that a lot of us have been complicit in this silencing, and that we need to address this in disability culture. Partly for the sake of better solidarity with wheelchair users; partly because the silencing is hurting all of us.

I think that all disabled people face pressure to see ourselves as characters in a story about accessibility. Sometimes we’re expected to write the story. Sometimes we’re seen as characters in a story someone else is writing. Sometimes we’re supposed to believe that the story has already been written, and that all we have to do is get people to read the book.

I think that wheelchair users face particularly intense pressure to pretend that the story has already been written and has a satisfying ending. That’s not something any of us should envy. It’s not privilege. It’s silencing. And I think we need a lot less silence and a lot more solidarity. It doesn’t have to be this way, and it isn’t always this way. When we have space for honesty about the realities of disability, our communities are a lot stronger.

Wheelchair users are not a collective accessibility success story. Wheelchair users are people. None of us are stories. We’re all people. No amount of accessibility is going to make our bodies and brains irrelevant. Disability rights advocacy shouldn’t be about erasing difference. The point is not sameness; it’s equality. Accessibility is about building a world that treats us all as fully human, differences and all.

Disabled presenters tend to face really intense ableism. One way this plays out is that audiences laugh at us when we talk about serious things.

This happens particularly frequently when:

  • Nondisabled professionals or our parents are also on the panel, or presenting right before or after us.
  • The audience is primarily parents of disabled children/adults.
  • The audience is primarily professionals who work with people with intellectual disabilities.
  • We talk about a desire to be taken seriously.
  • We discuss our objections to being treated like children.
  • We describe being proud of a personal accomplishment.
  • We describe being treated inappropriately by a professional.
  • We describe how we felt as disabled children.

When audiences do this, it’s not nice laughter. It’s a way of asserting power. That laughter means “I don’t have to take you seriously”.

As a disabled presenter, it’s often possible to insist on respect. It’s easier said than done. It gets easier with practice, but the practice often hurts. Here are some things I’ve found helpful:

It can help to remind yourself that you know what you’re talking about, and the things you’re saying are important:

  • You’re presenting because you know what you’re talking about.
  • People should take your expertise seriously. When you talk about the things you know, they shouldn’t laugh at you.
  • Your accomplishments are not a joke. People should not laugh or be condescending about them.
  • People who treat you like a baby are doing something wrong. Your desire to be treated in an age-appropriate way is not a joke. People shouldn’t laugh at you for talking about it.

When an audience laughs at you, it can help to make it uncomfortable for them:

  • Don’t smile, and don’t laugh yourself.
  • Wait for the audience to stop laughing. 
  • Wait a second before going on to make it feel awkward. 
  • One option: Ask the audience “Why is that funny?” then continue.
  • Another option: Repeat what you said before people started laughing.

Try to avoid nervous laughter and nervous smiles:

  • It’s taboo for disabled people to talk about disability.
  • Talking about taboo topics can be embarrassing.
  • When we’re talking about embarrassing things, it can be natural to smile or laugh nervously.
  • If you seem embarrassed, the audience is more likely to feel like the topic is embarrassing and laugh to get rid of the embarrassment.
  • If you laugh, the audience is more likely to feel like it’s ok for them to laugh.

Making jokes on purpose:

  • Making jokes can be a way to control what people are laughing about.
  • This can be easier than getting them to not laugh in the first place. 
  • In these contexts, it can be better to avoid self-deprecating humor. 
  • It’s usually better to make jokes about ableism.
  • (This isn’t a hard-and-fast rule though, do what works for you.)

For instance, say you’re giving a talk about educational discrimination:

  • This is self-deprecating: 
  • “I was this ridiculous little kid in third grade. I was so enthusiastic, but I couldn’t even read. I’d hold up the books and pretend. My imaginary friend may have stolen the cookies, but she sure didn’t read for me.”
  • This is making fun of ableism:
  • “My teachers kept assigning me worksheets that I couldn’t do. They kept making me read in front of the class, even though I could never do it. They kept telling me to just do it. And they say we’re the ones who lack empathy and theory of mind.”

Don’t beat yourself up when things go wrong:

  • Presenters/panelists with disabilities face intense ableism.
  • It’s going to hurt sometimes.
  • The problem isn’t that your skin is too thin; the problem is that people are hurting you.
  • A thick skin is still worth developing.
  • If an audience laughs at you, it’s their fault, not yours. They shouldn’t act like that.
  • It’s messed up that we have to develop skills at deflecting ableism and insisting on respect. 
  • It’s also worth knowing that these skills exist and can be learned.
  • It gets much easier with practice, but no one succeeds all the time.
  • When a talk goes bad, don’t beat yourself up, and don’t blame yourself for the audience’s ableism.
  • You’re ok, they’re ableist, and the things you have to say are still valuable when they’re not valued.

These are some of the methods I’ve used to deal with audience ableism. There are others. What are yours?

Tl;dr Disabled presenters face a lot of intense ableism. In particular, audiences often laugh at us. Scroll up for some methods for insisting on respect.

More reader picture book suggestions

moretufflesspuff said:  Miss Bindergarten has featured students with disabilities. Schools first Day of School by Adam Rex has children with disabilities (and the school itself deals with the bullies and being shy).

mrskaaay said:  Daniel Tiger is geared toward the really young, but Chrissy uses braces to walk. The books are based on episodes of the show but leave out bits so you’ll likely see Chrissy, not Chrissy The Handicapped.

goodnightmoonvale said:  There is a Curious George book about how he goes to the park to play with his friend who is in a wheelchair and she’s really good at basketball. It’s called “curious George joins the team”

Picture book recommendation

Ettina Kitten said:

I haven’t read it, but I’ve heard that So Don’t! & See What Happens by Sarah Leal is a picture book with a main character in a wheelchair who uses AAC and the plot isn’t about her disability.

realsocialskills said:

Thank you! It looks like it might be hard to get ahold of a copy, but it’s good to know it exists. 

Does anyone else know of books like that?

Disability doesn't come with extra time and energy

I’ve heard a lot of advocates of inclusion say things like “kids with disabilities work twice as hard as everyone else” or “my employees with Down’s syndrome never come in late or take a day off.”

This sounds like praise, but it isn’t.

The time disabled people spend working twice as hard as everyone else has to come from somewhere.

There are reasons why kids aren’t in school every waking moment. There is a reason why vacation time exists and why it’s normal to be late occasionally.

People need rest. People need leisure time. People have lives and needs and can’t do everything.

Being disabled doesn’t erase the need for down time. Being disabled doesn’t erase the need for play, or for connections to other people.

Working twice as hard as everyone else all the time isn’t sustainable. Praising disabled people for doing unsustainable things is profoundly destructive.

People with disabilities should not have to give up on rest, recreation, and relationships in order to be valued. We have limited time and energy just like everyone else, and our limitations need to be respected.

It is not right to expect us to run ourselves into the ground pretending to be normal. We have the right to exist in the world as we really are.

"Have fun" should not be a rule

A lot of summer camps, youth groups, and other activities have a “have fun” rule.

The implied message is usually: This is a fun place. If you’re not having fun, you’re doing something wrong. Fix your attitude and have fun doing the fun activities.

Sometimes “have fun” rules are explicit. Sometimes they’re more implicit, and come in forms like: making people sing a song every day about how much they love camp, announcements about “we’re all having so much fun!”, or whatever else.

The problem with this is: nothing is fun for everyone. People have the right to feel how they feel about things. It’s really degrading to tell an unhappy person that they should just feel some other way.

“Have fun” rules are especially problematic for many disabled people.

Because — most programs are not fully accessible, even when they think they are. Most of us expect to encounter activities that are inaccessible in ways that make participation impossible — or that make them no fun.

And often, initially fun activities are ruined when someone treats you in a degrading way or says something awful about disability.

Being left out when everyone else is having fun is bad enough. When there’s a “have fun” rule, it’s even worse. Not only are you hurt by the exclusion, you’re told that you’re violating the rules by being hurt and unhappy.

“Have fun” rules make it really hard to solve these problems, because they make it risky to admit that you’re not having a good time.

“Have fun” rules make problems harder to solve, even when the problem has a straightforward solution. All the more so when the problem is complicated. (Or only has a partial solution.)

“Have fun” rules actually make things a lot less fun.

Recognizing uniqueness is not a substitute for thinking about disability

Teachers who are really good at teaching typically developing kids sometimes have trouble understanding the significance of disability. I’ve heard a lot of things like “all kids are unique” and “I always individualize my approach for every kid” and “I don’t see the need to label any kids as disabled, it’s just a matter of finding what works for them”.

This sounds positive, but it can be a disaster for kids with disabilities.

We talk a lot about uniqueness, but a lot of effective teaching depends on understanding ways in which kids are similar to each other. Developmentally appropriate practice means understanding how kids the same age are similar to each other — then being flexible in ways that recognize kids’ unique humanity. We develop a sense of what the range of difference is for kids of a particular age.

Kids with disabilities are more different than that, and we need to take those differences seriously. Disability matters, and practices based on typical developmental milestones don’t account for it.

For instance:

Developmental milestones tell us:

  • Two year olds don’t have the motor skills to support handwriting.
  • Early education helps two year olds develop the motor skills that will eventually support handwriting.
  • Ten year olds do have the motor skills to support handwriting.
  • If they’ve had appropriate education, ten year olds should be able to write.

Developmental milestones don’t tell us:

  • How to teach ten year olds who don’t have the fine motor skills to support handwriting.
  • What early literacy and pre-writing instruction looks like for young children who are unlikely to develop the motor skills needed to support handwriting

It’s also important to understand the difference between unusual and unique. Disability means having unusual differences. But not every difference is unique. Some differences are shared by other people with disabilities. Those shared differences are important.

We need to understand the disability-related similarities. Part of that is having the right words to describe them. Calling disabilities by their right names isn’t about labeling, it’s about breaking isolation and making important things speakable.

For instance:

Braille:

  • Braille exists because blind people need it to exist
  • The differences between sighted people and blind people are a reason that braille needs to exist.
  • (And a reason that Braille is better than raised print).
  • The similarities between many blind people are a reason that braille *can* exist as a standard way of accessing literacy. 
  • If each blind person was completely unique, there would be no way to create a reading and writing system that would work for large numbers of blind people.

Some other examples:

  • Wheelchairs.
  • Ramps.
  • Large print.
  • Cars with hand controls and/or wheelchair lifts.
  • Text-to-speech communication devices.
  • VoiceOver and other screen reading software.
  • Signed languages.
  • Medications that manage symptoms.
  • Supportive seating.
  • The ADA, Section 504, IDEA and other disability rights laws.

People with disabilities are unique, and not interchangeable with each other. Similarly, kids the same age are unique, and not interchangeable with each other. Both the similarities and differences are important.

Tl;dr Sometimes progressive educators are uncomfortable with the concept of disability, and want to instead just see every kid’s uniqueness. That doesn’t work, because disability means having unusual differences — and because the differences aren’t unique; they’re shared with many other disabled people. Recognizing uniqueness isn’t enough — we also need to understand and accommodate disability.

Taking pills when it’s difficult to do so

arrowhearts said to realsocialskills:
I was wondering if you knew of any tips or resources for taking (pill-based) medications daily when for a variety of reasons (anxiety, forgetfulness, bad taste, fear, etc) it is difficult to do so? Also thank you so much for the time and thought you have put into this blog! It has been very useful and informative to me!

realsocialskills said:

There are some potentially useful reminder/tracking apps for iOS, Android, and Apple Watch:

  • Mango Health, which is gamification-based and offers rewards/badges for taking your pills every day. (It’s not very flexible.) It also has notifications and reminders.
  • (If you like gamification, HabitRPG may also be helpful).
  • Medisafe, which is in no way gamified and isn’t trying to make you have fun or like anything. It’s just an app that tracks medications, gives reminders, and has a few other features. 

Getting help remembering from someone else:

  • Some people find it helpful to have someone remind them to take pills.
  • Or ask them whether they’ve taken a pill.
  • Or to bring them the pills.
  • (Both medication apps allow you to link another person to your pill-taking records, if you want to.)
  • This can also backfire, and isn’t the right option for everyone.
  • (One way it can backfire is that if you ask people for help remembering, they may think that it’s their job to *make* you take it, whether you want to or not.)
  • (Needing help with the logistics of pill-taking doesn’t mean that you need someone else to take over your medical decisions, but a lot of people think it does).
  • Some people also find that their anxiety skyrockets when others pay attention to their pill-taking.
  • Sometimes this is less of a problem if it’s mutual (where you remind someone about their pills, and they remind you about yours.)

Help can also be more occasional:

  • Some people need occasional help figuring out the logistics, or overcoming anxiety or other barriers. It can help to have people you can ask for occasional help, along the lines of:
  • “I need to take my pill, but I need to eat before I can take it, and I have no food. Can you help me figure out how to eat?”
  • “I can’t make myself take my pill, can you tell me to go do it?”
  • “Can you remind me that it’s ok to take pills and that I’m not being lazy or something?”
  • “I’m having trouble with the pharmacy’s online refill system, do you know how it works?” 
  • tl;dr: Needing help doesn’t mean needing others to take over, and it doesn’t necessarily mean needing supervision or ongoing daily assistance. 

If the problem is that the pills taste disgusting or are hard to swallow:

  • Sometimes this is a problem that goes away over time.
  • Sometimes if you keep tasting a particular taste regularly, it become less disgusting.
  • Similarly, many people who initially find swallowing pills difficult find it much easier as they get more practice.
  • You can also put the pill in a spoon of something like applesauce, yogurt, or pudding. That can mean that you taste and feel the pudding and not the pill, which can make swallowing easier for some people.
  • Some people find it helpful to chase pills with a liquid they like.
  • (A caveat about that:
  • If  the taste/sensation makes you feel sick to your stomach or like you’re going to throw up, it may not be a good idea to drink/eat something you really like right after. 
  • Because you can end up associating that feeling with the thing you like, and then develop an aversion to that too.
  • But if the nasty-tasty pills *don’t* make you feel sick, washing the taste away with something you do like can work really well.)

If the problem is irrational or mostly-irrational anxiety:

  • Reminding yourself that the anxiety is irrational can help.
  • Reminding yourself what the pill does and why you want to take it can also help.
  • And once you get used to taking the pills regularly, the anxiety may go away.
  • Some people find it helpful to think things like “This is scary, but I can do it, and it won’t always be this scary.”
  • One reason that taking pills can be scary is that it can be an unpleasant reminder that you need the pills. 
  • If that’s a barrier, it might help to remind yourself that you need the pills whether you take them or not. 
  • Or you might know that it causes side effects you hate.
  • It also might help to complain about this to yourself, along the lines of “I really !#$!$# hate having to take this pill”.
  • (Having to take pills can suck, and it’s ok to have feelings about it.)

If the issue is reluctance or reservations about the pills:

  • I’m somewhat uneasy about mentioning this, because logistical difficulty is often dismissed as unwillingness to take pills.
  • That said — sometimes the problem really is that someone is trying to force themself to take pills that they don’t really want to take.
  • Everything is harder when you don’t want to do it.
  • There are all kinds of reasons that people might not want to take medication. (Some good reasons, some bad reasons).
  • Eg: Some people feel ashamed of needing medication, or feel like they should be able to somehow will themselves to not need it.
  • Eg: Sometimes the side effects really suck. Sometimes side effects mean that a given treatment needs to be reconsidered.
  • Eg: Sometimes people take pills that don’t seem to be working, and that can be demoralizing.
  • Eg: Sometimes people are misdiagnosed, and prescribed medication that isn’t appropriate, (or suspect that they were misdiagnosed).
  • Eg: Sometimes things that seem like a good idea in the doctor’s office don’t seem like a good idea in day-to-day life.
  • Eg: Sometimes when people have been taking a pill for a while, they forget what it was like without the pill — but keep noticing the side effects. This can make it hard to feel that the pill is still worthwhile.
  • Eg: Sometimes people come under intense pressure from others to believe that a particular pill will fix things. This can get complicated if the pill isn’t actually the right solution.
  • (And there are any number of other reasons).
  • Sometimes the solution to this is changing your attitude towards your medication, and sometimes the solution to this is changing your treatment plan. (And sometimes it’s a combination of both). 
  • So it might be worth asking yourself: How do you feel about taking this medication, Is this a pill you want to take?
  • Why are you taking it? Why was it prescribed? Do you agree with the reasons?
  • Are you having side effects that suck? Are you questioning whether the side effects are worth it? 
  • Is there another option you want to consider, or does this seem like the best choice for now?
  • If you really are reluctant, err on the side of taking that seriously. You may have a good reason, and it may lead to needed changes.
  • If you think about it and decide that your reluctance is irrational, that can also be very helpful.
  • Either way, if the problem is reluctance, thinking through things and getting to a point where you feel confident that you’re making the right choice can help a lot.
  • *All that said*, it’s important to remember that taking pills can be hard for all kinds of different reasons.
  • Some reasons it can be hard to take pills have absolutely nothing to do with how you feel about them. 
  • Wanting to take pills doesn’t always make it possible to take pills.

Sometimes pills are easier to take if you associate them with an action you do every day rather than with a time. Eg:

  • If “take nighttime pill at 11pm” doesn’t work, “take nighttime pill when I brush my teeth” might.
  • If “take morning pill at 8am” doesn’t work, “take morning pill after I eat breakfast” or “take morning pill when I get into my car/bus to go to work/school” might work.
  • Or “I’ll take my pills when my kids come home from school and I’ve given them theirs”.

Sometimes changing where/how your pills are stored can make a big difference, for instance:

  • Keeping pills in the medicine cabinet can make it easier to take them when you brush your teeth
  • Keeping pills next to your bed can make it easier to take them when you get up and/or when you go to bed
  • If you frequently forget to take your medication, keeping some in your purse/ backpack/etc can make it easier to take it once you realize you forgot.
  • If you need to take medication when you eat, keeping the pills near your food might help.
  • Some people find pill sorters really helpful. They’re clear box-things with a box for each day, and at the beginning of each week you put a week’s worth of pills in them. This can also be a way to tell whether you’ve taken a given dose or not.
  • Sometimes you can get pills packed in blister packs, with a compartment for each day. 
  • (Birth controls are usually packed this way, and some pharmacies can pack any kind of pill this way).

If part of the issue is privacy:

  • Sometimes not wanting other people to know can complicate taking medication.
  • This is a common issue for birth control pills — and there are cases you can get for birth control packs that look like little makeup cases. (So you could keep it in your purse and it would just look like you have makeup).
  • (If you’re in a situation in which it’s unsafe for others to know that you’re using contraception, birth control pills may not be the best option. An IUD or Depo-Provera shots might be better. Planned Parenthood can help you consider options.). 
  • Similarly, it might help to keep pill bottles inside little containers that don’t look like pill things (eg: Claire’s has coin purses that are a good size for this).
  • Or to get a lockable toolbox and keep the key on your keychain.
  • Or to keep pills in your gym back if you have one — most people are going to assume there are gross sweaty clothes in there and be reluctant to look.
  • If you’re in college and don’t want your roommate to know about your pills, it might work to keep your pills with your shower stuff, and take them when you shower.
  • Or to keep pills in your backpack, go to the bathroom after class, and then take the pills there

If part of the issue is that they’re hard to afford:

  • If you’re taking a name-brand drug, look online for a coupon. A lot of companies offer them.
  • If you’re taking something insurance isn’t covering, GoodRx can often save you a LOT of money. (It tells you about coupons, and shows you which pharmacy near you has the lowest price.)

Anyone else want to weigh in? What are some strategies you know of for dealing with pills?

You can only fight evil as the person you really are

When you’re fighting evil, it’s important to be aware of your limitations. You can only fight evil as the person you really are. Trying to ignore your limitations will not make you a better activist — it just crushes you.

Fighting evil is a lot of hard work. It’s not just about being a good person, or caring, or having the right values. Mostly, it’s work. And no one has infinite capacity to do that kind of work.

In fact, no one has infinite capacity to do *any* kind of work. As human beings, we’re limited. We have bodies, and needs, and we can’t do everything. Trying to work flat out all the time doesn’t end well, no matter how important the work is.  

One of the things we need is love. Part of that is being aware that not everything is evil. Some things are good. Some things are amazing. Some things are important in other ways. And, no matter what, people matter, and our world is worth fighting for.

Fighting evil is incredibility emotionally draining. In order to fight evil, it’s generally necessary to come into close contact with it. And to face the fact that not everyone is on your side, and not everyone means well. Many people act with active malice or callous indifference. It can be very hard to keep going when you lose an important battle and feel the weight of the consequences. It can be very hard to avoid slipping into despair. Love is one of the most powerful defenses against despair.

It is not only ok but *necessary* to find things that you can value and enjoy. Valuing your own life and the things you enjoy is an important act of resistance. Keep in mind that one of the lives you’re fighting for is your own. You are worth fighting for.

You may have to do hard, draining things that no one should ever have to do. You may have to make sacrifices. You may need to learn how to do things you never thought you’d need to do. But you don’t have to do more than you’re capable of doing — and trying to ignore all of your feelings and limitations will not help.

Understanding your limitations actually makes you more effective (at activism and at anything else you might want to do.) Working with your brain and body works better than trying to become a superhero through sheer force of will. You can only fight evil as the person you actually are.

Struggling more with disability in the aftermath of the election

Everything gets harder under extreme stress. The aftermath of the election is an extremely stressful situation, and a lot of people are struggling.

This is not a normal situation. Donald Trump is almost certainly going to become President in January. He has promised to do awful things. His actions since Election Day have not been reassuring. This is a terrifying situation. For many people, it’s life threatening. It’s hard to function in a situation like this.

If you have a disability, this may be affecting you differently than it’s affecting nondisabled people. Most people are having trouble right now; most disabled people are having additional disability-related trouble.

If you have a mobility disability, moving might be harder right now. If you have a speech disability, speaking might be harder or impossible right now. If you have sensory issues, some sensory input you are normally able to deal with might be intolerably painful at the moment. If you have an eating disorder, it might be harder to control it right now. If you have seizures or migraines or other neurological problems, your threshold might be lowered. If you have trauma-related triggers, they might be harder to tolerate, or you might be more hypervigilant than usual. If you are hard of hearing, it might be much harder to understand spoken conversations right now. And so on.

Things you’re used to being able to do might be harder or impossible right now. Coping mechanisms you’re used to relying on might not be working. This is true for everyone, disabled or not. But with disability, we’re also having functioning problems that most people around us aren’t having. That can in itself be difficult to cope with.

For many of us, self acceptance as disabled people is a struggle. Under extreme stress, acceptance can be even harder. Acceptance is a skill just like everything else — and under extreme stress, many of us are dramatically more impaired. Acceptance gets harder, at the same time that there is suddenly more to accept. But you’re still worthy of acceptance. You’re not broken. It’s just hard.

Being disabled isn’t a failure. Being more impaired in a time of extreme stress isn’t a character flaw. You’re not alone in struggling. Nondisabled people are also more impaired right now; and they also can’t make it go away through sheer force of will. The particular things you can and can’t do may be different — because you have a disability, and disability matters.

Tl;dr The aftermath of the election is extremely stressful. This kind of stress makes everything harder. If you have a disability, some of your coping skills might not be working very well right now. Acceptance may also feel a lot harder. It’s worth remembering that it’s normal to struggle in situations like this — and it’s not your fault that disability matters now. Your body is not a character flaw.